What I have found incredible, how­ever, is the 100 per­cent validity of the “everything being rel­a­tive” state­ment when confronted with can­cer on a personal level. Remember the day when the doctor told you you have can­cer?

Prior to my mul­ti­ple myeloma diag­nosis, I sus­pect that the most physically painful chal­lenge I faced was a broken jaw. Emotionally painful, no doubt about it, was the death of my father. Mentally taxing, I suppose, is running my own busi­ness.

And then one day I was told I have mul­ti­ple myeloma. The “things being rel­a­tive” state­ment changed sig­nif­i­cantly – physically, emotionally, and mentally.

Multiple myeloma lives with me 24/7/365. Its time­frame is from now until I die. Wow. Living with can­cer is not like a broken jaw. It has been an all-encompassing ex­peri­ence. The dif­fi­culty for me has been to put “living with can­cer” into some sort of per­spec­tive.

I had no pre­vi­ous ex­peri­ence dealing with such a powerful situation that in­cludes physical, emotional, and mental chal­lenges on a con­stant basis. I had no idea and still do not know what to ex­pect. Yes, I can read and listen to all the ideas and opinions about living with can­cer from others. How­ever, this is my can­cer. The others do not know me or my thresholds.

What do I con­sider hard to live with or easy to man­age? At what threshold is it okay to blow up? What is an ac­cept­able level of emotional detachment? How am I defining the existence of suffer­ing, of joy, of compassion, of gratefulness in my life? Am I being a bit disingenuous when justifying boorish be­havior because I have can­cer?

I suppose it is all rel­a­tive, but rel­a­tive to what?

Most recently, I had to order Revlimid (lena­lido­mide) from the spe­cial­ty pharmacy. How lucky I have been that it has been almost six years of re-orders. But I've got to tell you, the process of getting my med­i­cine is taxing. I get the sweats when I ini­ti­ate the call for a re-order because it is a cumbersome process that is so totally out of my con­trol.

The doctor’s office, the spe­cial­ty pharmacy, and insurance com­pany all have to be coordinated be­fore any­thing moves for­ward. I have to rely on Wyoming doctors, insurance per­son­nel in Texas, and spe­cial­ty pharmacy per­son­nel in Florida. My stomach churns writing about this.

After all of the forms, surveys, and de­livery dates get set and the pharmacy ships the package to a de­livery service with a jet airplane (to get it near Wyoming in a timely fashion), a de­livery van gets the package from the airport to a de­livery hub closer to Wyoming. Then, trusting that the package is correctly loaded on another de­livery truck, a driver and truck have to negotiate about 80 miles (130 km) of “good roads” to get it from the hub to my hometown.

“Good roads,” you ask? What am I talking about? Well, already in Sep­tem­ber, Octo­ber, and No­vem­ber of this year, the roads into and out of Laramie have been closed for a period of time due to excessive snowfalls and high winds, the opposite of good roads. So “good roads” means that the road is open and navigable by the driver and the truck (the ones with the hard, palm-sweating jobs, rel­a­tively speak­ing).

There is no exact time when the de­livery will arrive, yet someone has to sign for the package. I ac­cept this. However, it is similar to the old com­plaint about cable com­pa­nies and their in­abil­ity to pin down when their technicians will arrive to hook up the cable.

Once the package finally arrives, I still can't relax until I check to verify that it con­tains what it should.

And that whole process hap­pens every month.

I get to ex­peri­ence all of that because I am living. The chal­lenge for me is to re­spond to the process civilly. And, at times, it is not easy. I get frustrated. I lose my temper, get sideways, and maybe a little loud over the phone as I try to man­age what turns out to be an unmanageable process. And then I get to feeling bad, and I want to apologize to everyone for my rude or obnoxious be­havior because I know better.

All that being said, going through the Revlimid re-order is a cake walk, rel­a­tively speak­ing, com­pared to a bone mar­row trans­plant.

I have to remember: it’s all rel­a­tive.

To those reading, Happy Thanksgiving! May the good­ness of the day accompany your journey.

We had winter tires put on one of our vehicles, and my hus­band Dilip got out the snow blower we bought a couple of years ago. ecause of the injuries I sustained many years ago due to myeloma, I am not supposed to lift heavy items, so I didn’t help to lift tires on rims or clear the winter walks.

This recent incident reminded me of the many other things Dilip does for me to make my life with mul­ti­ple myeloma easier, especially now with the raging Covid-19 epi­demic. In our area, the num­ber of Covid-19 cases is now higher than it was in May.

Since my cur­rent treat­ment of Dar­za­lex (dara­tu­mu­mab), Revlimid (lena­lido­mide), and dexa­meth­a­sone causes me to be im­mune compromised, I have been even more cautious about going out now that the epi­demic is raging. I wear a mask in pub­lic and talk to friends outdoors from a safe distance. Dilip now does all our gro­cery shopping. He takes ad­van­tage of the early-morning “seniors hour” to lower his risk of exposure to the virus. He still works as a physician at a stroke rehabilitation unit, but is very careful to avoid getting this virus.

Dilip is also very con­siderate about helping me with the side effects of the drugs I take. The cur­rent treat­ment has proven to be very ef­fec­tive in treating my myeloma; I am getting close to a remission again, it seems. However, the dexa­meth­a­sone may cause what I would de­scribe as confusion, so I am not too ef­fi­cient for a couple of days a week. He drives me places, and also is good at any sort of computer or tech­ni­cal work, where I tend to make mistakes.

In addi­tion, the Revlimid can cause me to have gastro­in­tes­ti­nal issues, especially to­wards the end of the 21-day treat­ment cycle. Even though I take Olestyr (Questran, cholestyramine for oral suspension), a bile acid in­hib­i­tor, and at times also Imodium (loperamide) to man­age the issues, it can mean that I don’t feel like going out (such as going for a walk or seeing our grand­chil­dren) at the same time that Dilip does, or that I am slower to get ready in the morn­ing. He is very under­stand­ing, and we accommodate to our dif­fer­ences in schedules.

My dear spouse also reminds me to take my med­i­ca­tions, which now are quite a few since I’m cur­rently also on main­te­nance ther­apy for breast can­cer. Even though I keep a chart of med­i­ca­tions to take, I need to be reminded some­times because I noticed that I have be­come a little more forgetful over the years. Occasionally I would com­pletely forget to take my med­i­ca­tions if he didn’t remind me.

The fourth week of my treat­ment cycle, which I call ‘treatment week,’ is a little hectic for both of us. On Monday I take blood tests, Tuesday I have an appoint­ment with the oncologist, and on Wednesday I get the Dar­za­lex in­fusion at the treat­ment center. Dilip takes me to all the appoint­ments. Due to the Covid-19 pan­dem­ic, he does not always come into the can­cer center with me, but it still takes a chunk out of his day to just shuttle me back and forth.

As you may know by now, I have an extensive hobby of needle and fiber arts. I have an unending supply of projects, it seems, and I am always work­ing away on a few of them simultaneously in my spare time. These projects pro­vide me with peace of mind and give me a sense of accomplishment. Dilip is sup­port­ive of my hobby, which in turn is a blessing to me. If it makes me happy, he is happy.

At the same time, I recog­nize that I am feeling a lot better than at some pre­vi­ous times in my ‘myeloma journey.’ I there­fore try to remember that he can get tired too and make more of an effort to help him out more also. For example, I have been trying to de-clutter our home more lately since simplicity is helpful for ef­fi­cien­cy. If things over­all are running smoothly in our house­hold, we will have more time for the ac­tiv­i­ties that we enjoy.

In addi­tion, I try to give Dilip space to live his own life, since he is not a can­cer patient. He is so sympathetic that he can get too caught up in my prob­lems some­times.

We have been to­geth­er for almost 46 years now, and I don’t know how I would cope without him. We reminisce about all of the wonderful times we have had to­geth­er. We try to skip over times that were not so good, such as the med­i­cal prob­lems during the myeloma decade. But even the last decade has brought us much joy, since our family has ex­panded to hav­ing five grand­chil­dren and two wonderful sons-in-law. We work to­geth­er as a team to be grandparents, and are known as ‘Nana and Tata.’ We could not think of a nicer lifestyle.

I am really glad to be in a lifestyle where I am ap­pre­ci­ated even though I am coping with can­cer treat­ments. I cer­tainly ap­pre­ci­ate the other kind people in my life, especially my hus­band. I really don’t know how I could man­age half as well without him helping me.

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The quotation for this month is from Scott Adams (1960 – ), the creator of the Dilbert comic strip, who said: "Remember there’s no such thing as a small act of kindness. Every act creates a ripple with no logical end."

So in our case, the dif­fi­cult cir­cum­stance is can­cer; if we see another sun­rise, we are sur­viving.

I like sur­vival. Survival is good. It is some­thing that I really, really desire. Without being political, I unabashedly vote for sur­vival!

However, just using or ac­cepting that definition of sur­vival, in the base manner of 'existing under dif­fi­cult cir­cum­stances' as the bonafide best definition, really short­changes what sur­vival is all about. Survival means more than just moving for­ward under dif­fi­cult cir­cum­stances.

Each and every one of us with mul­ti­ple myeloma “survives” in our own way for as long as pos­si­ble, be that one day, one month, one year, or 10, 12, or 20 years. The issue for me as I sur­vive is not about the moving for­ward as much as it is about the “how” I move for­ward. And how I move for­ward is tied directly to who I am.

Knowing who I am helps re­duce some of the angst, un­cer­tainty, and disappointment that comes with hav­ing and sur­viving can­cer. It helps stabilize my thoughts and actions. It pro­vides me with an oppor­tu­ni­ty to look at a situation that generally is not desired and full of worry and man­age it in a manner that makes moving for­ward, makes sur­viving, a bit more doable.

I have a tendency to worry. I realize that worrying is non-productive and costly, yet I still worry. The “worry gene” is in my DNA. When my myeloma num­bers come back and there is a slight move­ment up (which is not the desired out­come), I get worried. My mind has me racing to a finish line that has as its reward my non-survival. Great! Surviving such a predicament without going too crazy re­quires me to look at myself and identify my strengths and the tools I possess to handle sur­vival. Then, using said strengths and tools to the extent that I am ca­pa­ble, the “moving for­ward” part is con­siderably less stressful.

Who I am de­ter­mines what I will do and as an extension how it will be done. Thus, who I am will define my sur­vival.

Each of us has our own way of figuring out who we are. I know I have gained some insights and wisdom about myself through the ex­peri­ences I have had. Having can­cer brought out portions of myself that I may not have realized were present prior to my diag­nosis and sub­se­quent treat­ments. Going through a stem cell trans­plant, sitting in a hos­pi­tal room waiting for the white blood cell count to in­crease to the point where I could leave the hos­pi­tal, pro­vided me ample time to eval­u­ate what sur­vival would look like.

I have had to ask myself ques­tions about what I ex­pect out of this ex­peri­ence we call life. My likes, my dislikes, my con­cerns, and my joys. I have had to be honest about the appraisal I give to what I see / saw around me and what, if any, re­sponse I would have to what was going on. I had to make sure that (here’s a Pink Floyd "Brain Damage" reference) there was not “someone in my head but it’s not me.”

There's a biblical verse that asks, “For what will it profit a man if he gains the whole world and loses his own soul?”  Well, for me, I had to address that ques­tion as it applies to sur­viving can­cer. I sure as heck did not want to “lose my soul.” For me, sur­vival is all about asking that ques­tion and then being able to identify what it means to me to gain the whole world, to gain another day, or week, or month, or year, without losing my soul. Some­times, addressing that is tough stuff, especially when there is no cer­tainty and little con­trol as to what we will encounter as we move for­ward.

One of Henry David Thoreau’s most famous quotes mentions “the mass of men lead­ing quiet lives of desperation.” Well, I like fun, and a 'quiet life of desperation' does not sound like fun. Is living such a life really sur­viving?

Survive and move for­ward. It sounds so easy and innocent. Yet, I have learned that there is not too much that is easy about hav­ing can­cer.

Getting to know myself, taking some time to be honest with myself about who I am, had to be done. It still is being done. It really does not mat­ter if it’s easy or not. It’s about sur­vival.

Back in March, when Covid-19 was start­ing to grip my region, my doctor agreed that it would be prudent to hold off on treat­ment, as Seattle was in the midst of trying to prevent a surge of the virus. I happily complied and have been hanging out ever since. My num­bers have not been changing at all, so I thought that I could stay in this sort of sus­pended animation for quite some time.

But not so. I most recently ‘saw’ my doctor via a video­con­fer­ence call. He was masked and in an exam room; I was tucked in a corner of my bathroom, for privacy (plus the light and wifi are good in there). During that call, he said that they have man­aged to prevent the surge and they under­stand more about treating the virus. He added he has had one patient with smol­der­ing myeloma catch Covid-19 and not re­quire any treat­ment. So, ac­cord­ing to him, Covid-19 is under con­trol, and he advised I begin treat­ment.

I came away from that appoint­ment bewildered. It’s all good and well that the med­i­cal com­munity feels like they have a handle on Covid-19; I’m grateful for that. But for me, the patient, it’s still a very clear and present danger.

I have not been into a store since early March. My only in-person appoint­ments have been with the physical therapist, the lab, a PET scan, and a quick check at the dentist. My friends don’t come into my house. My hus­band-and-wife housekeeping team, which used to come every two weeks to do the big stuff, moved away in April after everyone dismissed them. I haven’t had any of my usual sup­port­ive care such as massage and acupuncture. I don’t have safe access to a pool or the gym. I don’t share a house­hold with my part­ner, so I haven’t been within six feet of him either. It’s just me and my teenage son, who only sees his friends for masked and socially distant outings outdoors, which are far and few be­tween.

Beginning treat­ment is a launch headlong into a scary un­known. While I’m not a con­trol freak, I am someone who likes to have some semblance of con­trol of the things that I can. I always imagined that when I would need to begin treat­ment, I would con­tinue to in­cor­po­rate integrative ther­a­pies to maximize my wellness and well-being as my body reacts to the myeloma med­i­ca­tions and my spirit is dampened by stress, pain, and un­cer­tainty. This pan­dem­ic takes those things off the table, and I’m left with a very lim­ited arsenal of things I can do to help myself have an optimal re­sponse to treat­ment.

Now this may sound like I’m whining, but I don’t agree. I have seen stud­ies showing that can­cer patients who have good social sup­port, use integrative ther­a­pies, and have pos­i­tive attitudes have better out­comes during treat­ment. The constitution of my attitude would be a lot stronger and more pos­i­tive if I wasn’t stuck in my home feeling guilty for putting my teenager through the terror of his only living parent hav­ing an incurable can­cer, and him hav­ing to give up his ac­tiv­i­ties to shield me from Covid-19. I would feel more in charge if I wasn’t in such a confined situation, wary of venturing out for wellness care, separated from my loved ones.

My stress level would be lower if the world wasn’t collectively grieving, if our country wasn’t in the midst of a contentious election, and if the 13th anniversary of my hus­band’s passing wasn’t looming. This, to me, does not seem like a good time to begin treat­ment.

But what are my op­tions?

I could refuse to start treat­ment, which makes me a liability and also puts me in danger of bad things hap­pen­ing (think compression fractures and kidney dis­ease). Do I get a sec­ond bone mar­row biopsy? If I do, what hap­pens if it comes back with less than 60 per­cent plasma cells? Do I get a sec­ond opinion? Do I just bravely begin treat­ment, and hope for the best (after all, most people are masked right now so maybe it’s not such a bad time to begin treat­ment after all?).

I don’t think any amount of meditation, yoga, or even prayer will help me figure this out. I guess for now I have to be ok with feeling dazed and confused.

May we all go from strength to strength.

She was also a patient.

In one of life’s ironic tragedies, Elaine tran­si­tioned from can­cer care­giver to can­cer warrior when she was diag­nosed with ad­vanced stage mantle cell lym­phoma in 2012. Elaine became a patient at the can­cer center where we live soon after my hus­band Daniel, and since then we shared many con­ver­sa­tions, treat­ment up­dates, and hos­pi­tal visits over the last eight years. Her advice was invaluable, and her insights brought with them a unique under­stand­ing of my role as care­giver and Daniel’s role as patient.

She had many treat­ments over the last eight years. Like Daniel, she ex­peri­enced clin­i­cal trials, tough pro­ce­dures, successes and failures. As her op­tions began to run out, she underwent CAR T-cell ther­apy. Sadly, it was un­suc­cess­ful, and her doctors said that nothing else could be done for her. Elaine passed away last month.

I have strug­gled to write this column because Daniel and I shared a con­nec­tion with Elaine that went beyond friendship. It was a blood can­cer con­nec­tion. And with her passing, I feel acutely the finality of the blood can­cer cycle. It is some­thing that only people who read this column are likely to under­stand. Seeing another person fight the same complicated, all-consuming strug­gle as Daniel and I fight – as many of you fight every day – is enough to instantly bind people to­geth­er and be­come a heart-wrenching loss when they leave us.

Legacies are a tricky thing. Death is so final, and we want our lives to have meant some­thing. I know that Elaine’s family could describe in detail how she was a loving wife, mother, grandmother, and friend. But for me, her legacy is not just based upon the rela­tion­ship that we shared. Elaine’s legacy was what she paid for­ward.

Elaine was the recipient of others’ kindness when her hus­band David was fight­ing can­cer. She told me stories about patients and nurses she would run into at the hos­pi­tal. There were nice strangers who shared inspirational stories or who provided her with en­cour­agement when she needed it. Then, again, when she re­turned to the can­cer center, this time as the patient and not the care­giver, again these kind nurses, strangers, and physicians appeared. It never seemed to fail that when she was the most discouraged, one of these can­cer con­nec­tions gave her what she needed the most. Their gift to her became her gift to us. Just as those people paid it for­ward to Elaine, Elaine paid it for­ward to us.

Having mul­ti­ple myeloma is not like hav­ing other can­cers. It can be very isolating. Explaining to most people how your loved one’s chromosomal ab­nor­mal­i­ties im­pact their risk level, or why you’re worried about an in­creas­ing M-spike, will often get you confused looks and blank stares. People don’t under­stand why lasting remission is dif­fi­cult, if not impossible, to achieve with myeloma. People don’t under­stand why Daniel is still getting treat­ments two years after he started them. It’s been going on for so long now that I think most people forget that his myeloma is not in remission. We rarely talk about it with other people because they can’t imagine what it is like to live with the side effects – the diarrhea, the swelling, the sleeplessness and fatigue – all while still work­ing a full-time job.

Elaine under­stood. She was an anchor for us. She gave sup­port to us in ways that we needed and could not even articulate. She listened, gave advice, checked on us during clin­i­cal trials, and made time to visit with us when we were at the hos­pi­tal. It was a comfort know­ing that Elaine’s wisdom was only a phone call or a text away. These past eight years would have been much lonelier without her.

Recently I began a friendship with someone whose hus­band was just diag­nosed with smol­der­ing myeloma. Having “watchfully waited” for six years with Daniel’s smol­der­ing myeloma be­fore he progressed to active myeloma in 2018, I instantly empathized with her as she is trying to navigate these new and dif­fi­cult days. I hope that I can pay it for­ward and be for her the ex­peri­enced voice of reason that Elaine was for Daniel and me. I remember so vividly how much I needed a voice of sup­port in those dark days, and how thankful I was to connect with Elaine on how to be a good care­giver to Dan.

In the end, per­haps paying it for­ward is the one legacy worth striving for. All we need to do is to help. Be there. Listen. Knowing that when we do, we honor those who first helped us. I think Elaine would have agreed with that. I think Elaine would have reminded us that no one wants to leave this life early, but what we do with our time here is as im­por­tant as what we leave behind.

Giving to others, paying it for­ward, and being a com­munity is the best way to not only use your time well, but also create a legacy to pass on through others. I don’t want to remember Elaine’s lym­phoma or how she left us too soon, but every time that I share a word of en­cour­agement with another care­giver, or I assure a new patient that they’re in good hands, I will honor Elaine’s memory.

Legacies can be so much more than names on stadiums, uni­ver­sity build­ings, or large estates. The best legacies we can leave behind are the peoples’ lives we’ve touched. I’m thankful to have been a part of that, and I hope to con­tinue to be so, re­gard­less of how long we have in our own blood can­cer cycle.

Before being diag­nosed, I did not smoke. I was a mod­er­ate drinker, ex­er­cised reg­u­larly, and lim­ited my intake of sugars and high cho­les­ter­ol foods. In general, I tried to take the steps I had heard about, read about, and be­lieved in that could help in main­taining or ex­tend­ing life as I knew and desired.

And then, boom, I was diag­nosed with mul­ti­ple myeloma. Cancer! How could that be? I mean, what the heck?

The fact that I had mul­ti­ple myeloma was not nec­es­sar­i­ly known to be linked to my lifestyle or work­style. Multiple myeloma knocked on my door, welcomed itself into my life, and then decided to stay, uninvited.

Hearing I had can­cer was a huge punch to the gut. The ensuing radi­a­tion and treat­ment acted as shots to my glass jaw and really woke me up to the fact that I had to in some respect “put up my dukes” and in some manner or fashion and fight back. I had to confront the possibility that I was a punch away from it being “lights out.”

In eval­u­ating the situation, I had to admit to myself that I was not as strong, not as wise, nor as in charge as I once con­sidered myself to be. And the sooner I ac­cepted that reality, the better.

For the first time in a long time in my life, I had to face the reality of know­ing without a shadow of a doubt that I needed help, luck, and good fortune. And in recognizing these needs, I also had to come to some under­stand­ing as to what I was ca­pa­ble of in terms of satisfying those needs.

In trying to define my capabilities, both mentally and physically, I had to first let go of my ego and its pre-myeloma ideas as to what my life needed to look like. I had to reestablish my capabilities for sur­vival. I needed to change my per­spec­tives on many “things,” such as redefining what “being tough” meant. I had to adopt new parameters for ac­cepting help.

As an example, prior to my myeloma diag­nosis, the idea of freely talking about toileting, gastro­in­tes­ti­nal functions, bathing, and hair loss to family members and strangers was not pos­si­ble. After my trans­plant, it was a whole new ballgame. I freely gave in­for­ma­tion and was comfortable in discussing such mat­ters of personal hygiene.

I also became more open to sharing thoughts and ideas about how I wanted to manifest kindness and compassion in my life moving for­ward. I was changing because ... well, I am not sure why, but I knew it was nec­es­sary.

As much as I saw changes in my mental and emotional being, I also ex­peri­enced physical “newness.” What I am ca­pa­ble of after my trans­plant and now five and a half years later does not look like what I was ca­pa­ble of prior to my diag­nosis. However, I am by no means com­plain­ing or disappointed. It is what it is.

While my desires are still somewhat defined by my pre-myeloma ego, each day for­ward carries me fur­ther away from that state of mind. Accepting my new reality and trying to find out what I am actually ca­pa­ble of, or not ca­pa­ble of, doing brings new adventures. Oftentimes it’s a relief to find out that some­thing just “ain’t going to hap­pen.” Often, it is accompanied by laughter and a realization that “My, how times have changed.”

Testing my capabilities, or actually my new capabilities, with regards to emotions, ac­­tiv­i­ties, thoughts, and con­cerns is on­go­ing. It is a moving target.

When I was first diag­nosed, I could not walk down the hallway in our house without experiencing tre­men­dous pain. After about a month of treat­ment, I was ca­pa­ble of walking to the end of the block on our street. The first time I picked up a golf club after my trans­plant, I was able to go to the putting green and “practice” my putting for about ten min­utes be­fore being totally ex­hausted. Eventually, I got to where I was ca­pa­ble of walking nine holes, and then eighteen holes, of golf. These were huge events. Events that re-defined my capabilities.

And the beat goes on (thank you, Sonny and Cher). About two weeks ago, sev­er­al friends, my wife, and I walked to the top of Medicine Bow Peak, which is just west of Laramie. It’s about a 3,000-foot hike up to 12,000 feet (3,660 meters). I was the slow­poke keeping up the rear guard. And for the majority of the hike, I was asking myself “Why in heaven’s name am I doing this?”

Well, being able to try, and learning more about my new capabilities, was well worth the effort. Having a new “living with can­cer ego,” now that’s the ticket.

We had never seen a bobcat or a porcupine on or near our deck, and seeing them was unnerving to me, even though we've not en­coun­tered these two animals in our garden since then.

Along the same lines, a scary incident oc­curred along an estuary when we were visiting Vancouver Island last month. We were walking on a path­way about ten feet above the waterline when we saw maybe ten grey shadows under the water moving in unison to­wards us. Just as we realized that the shadows were a herd of seals chasing some­thing, red blood spurted in the water as they caught and ate a fish. Three seals then swam up on the bank and stared up at us with their big round eyes.

I was totally unnerved by this incident with the seals for at least two days, and the ex­peri­ence made me think of times when having mul­ti­ple myeloma fright­ened me very much. It was dif­fi­cult for me to cope with the concept of having a destructive and life-threatening illness.

Back in 2009, a strange onset of crushing back pain only got worse over time and culminated in ex­treme­ly painful ver­te­bral fractures. The pain and fractures led to my diag­nosis of this rel­a­tively rare blood can­cer, and after the diag­nosis it did not help me much to read a lot of predictions as to where it would ultimately lead. Some people who had known someone with myeloma also told me how deadly it was, which fright­ened me. If it were not for the new drugs avail­able, the stem cell trans­plant, and the really good care I re­ceived, I don’t think I would be doing as well to­day.

Fear threatened to overwhelm me at every stage of the treat­ments, even as recently as last Octo­ber when I started treat­ment again.

In hindsight, I can say that it definitely was a fear of the un­known. The actual treat­ments were not quite as bad as they seemed in my imagination, and they helped me to diminish the myeloma. In addi­tion, I had very sup­port­ive family and friends helping me to get through all of this.

In the world of nature, animals must always be on the alert for danger. In our human world, we have to deal with danger as well and must be aware of our surroundings, which for those of us with myeloma in­cludes our blood test re­­sults.

The best thing for us, how­ever, is not to worry all of the time, lest we overwhelm ourselves with stress and fail to see the good things in life.

Since at its best being a myeloma patient can be a long-term pros­pect, I have learned to man­age my fears by work­ing around my treat­ments.

I know when the drugs I need to take affect me the most, and try to rest more at those times. Now that I am getting Dar­za­lex (dara­tu­mu­mab) every four weeks, I realize that the ‘treat­ment week’ is when I am at a low ebb. My immunities and energy levels are at their worst. Since I know this, I am able to look ahead and plan my time in the short term.

My dexa­meth­a­sone dose has been lowered now, so I don’t feel the effects of that drug as much, yet I am a bit more tired. I don’t bounce back from the dex as I did be­fore. Maybe I am just getting older and more tired, but it is dif­fi­cult for me to know that. I think, though, that I have less energy than others my age who do not take med­i­ca­tions for a chronic con­di­tion. However, I am really grateful that I am able to a large extent to par­tic­i­pate in my life as it was be­fore. Currently I am enjoying video­confer­enc­ing with my sup­port group, needlework guild, and choir. I have not had to drop all of my ac­­tiv­i­ties due to the treat­ments or because of the pan­dem­ic.

Thus, the concept of ‘fight or flight’ has been lessened for me because I can plan ahead. I can re­duce the fear factor by telling myself that whatever is the worst, and it is not that bad actually, will pass, and that my cycle of treat­ments is man­ageable. This is a great relief to me.

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The quotation for this month is from Marie Curie (1867 – 1934), a Polish-born French physicist and chemist, who said: "Nothing in life is to be feared. It is only to be under­stood."

When I’m not out work­ing the land, and by that I mean dead-heading rho­do­den­drons, fuchsias, and geraniums, pulling weeds, or picking green beans and chard, I can be found inside either messing up or clean­ing up the kitch­en, perched on the sofa videoconferencing with loved ones, cor­re­spond­ing, reading, re­search­ing, or mending.

When that got old, I found myself looking around my house, an­tic­i­pat­ing the long, soggy, cold days of the Pacific Northwest winter and wondering how that’s going to go.

At the be­gin­ning of the pan­dem­ic, a friend loaned me the “Little Book of Hygge: Danish Secrets to Happy Living.” According to author Meik Wiking, hygge (pronounced hyoo-guh) is a concept that in­volves gathering with friends, enjoying good food, and being comfortable and cozy. Multiple well-placed unscented candles, house plants, and lots of cozy textiles along with gathering with small groups of friends and enjoying simple good food is what creates hygge, ac­cord­ing to the book. “The true essence of hygge is the pursuit of everyday happiness and it’s basically like a hug, just without the physical touch,” Wiking writes. How fitting for these physically distanced pan­dem­ic times.

So suffice it to say that I am taking the threat of a long, soggy, dark, and lonely winter seriously. But hygge could be the antidote!

With to­geth­erness removed from the equation and suf­fi­cient candles on hand, nat­u­rally my thoughts turned to house plants. I became obsessed. I tried to buy some, sight unseen, via phone, from the local nursery, but that was a di­sas­ter. The kind person who helped me must have thought I lived in an office build­ing. No, that ball of a ficus on a braided trunk wasn’t going to work with the vibe I was trying to create.

But then I dis­cov­ered all sorts of plants for sale online, and be­fore I knew it, I had launched head first down a botanic rabbit hole. Next thing I knew, I was the overwhelmed owner of not one, but two very large house plants that arrived from Pennsylvania via Fed Ex in giant boxes, miraculously still alive.

I’m not sure what I was thinking. Under the influence of the threat of a lonely, stormy, dark winter looming on the horizon, ample time on my hands, a laptop at my fingertips, and hygge on my mind, I had chosen two five- to six-foot trees, thinking that of course they wouldn’t be as tall as the advertised height. But by golly, the six-footers arrived, looking just like the fake ones they sell at Ikea for ten times less, without the mess of real dirt, yards of brown paper and packing tape, and the need for water.

Now I’m looking around my house trying to find a suitable spot where the plants actually con­trib­ute to the hygge, rather than remind me of a disturbing mosquito and ant infested jungle episode of the TV series "Naked and Afraid."

As ridiculous as my plant-buying episode may sound, this is one of my ways of preparing to hunker down. I be­lieve that we’re in this pan­dem­ic for the long haul. Even when a vaccine be­comes avail­able, I sus­pect it will take a while for active im­mu­ni­ty to take place in the com­munity on the level to make it ‘safe’ for us myeloma folks to resume some semblance of our pre-Covid-19 lives. It is time to prepare for a long hibernation. Many of our pre­vi­ous ways of living and coping are not pos­si­ble right now. So many things, in­clud­ing mul­ti­ple myeloma, are beyond our con­trol. But we can con­trol how we cultivate our self-care and maximize our well-being, and that looks dif­fer­en­t for everyone.

For me, part of that is creating a cozy, comforting, and pleasing en­viron­ment that I can retreat to after cold, soggy walks, stressful doctor appoint­ments, or during hard days. For you, it may be some­thing com­pletely dif­fer­en­t.

Maybe I’ll even start hugging my hygge trees.

May we all go from strength to strength!

The first con­cern was that I had never really written much for pub­lic con­sump­tion, so I was un­cer­tain about my ability to connect with an audience or provide a reason­ably in­ter­est­ing take on living with mul­ti­ple myeloma. 

The other con­cern has been the always present un­cer­tainty as to whether or not I would still be around to write about my ex­peri­ence.

Well, here I am, 11 months later. Wow, time flied. And I must say, what a joy it has been.

I want to use this month’s column to ex­press some quick thoughts about subjects that have been con­sis­tently hanging around in my head the past 11 months.

Even after five-plus years of oral myeloma ther­apy, I still some­times strug­gle with swallowing pills, especially the big ones. There is a real sense of accomplishment when I can get through the day without getting a pill stuck in my throat.

In general, the med­i­ca­tion “thing” re­quires a bit of effort. There is ordering refills be­fore I run out. There is the keeping track of what needs to be taken on what day. And, of course, I try to make sure that I have some­thing to eat after I take my pills. 

All that having been said, every morn­ing for the last five plus years, I cannot help but thank those whose intelligence, re­search, and smart work made my myeloma med­i­ca­tion pos­si­ble. They and the med­i­ca­tion they devel­oped have kept me alive.

The fatigue and lack of stamina that accompany my mul­ti­ple myeloma journey make the lounge chair near the TV a very im­por­tant piece of furniture in our house. Of course, sitting on the chair is the TV remote, so you can under­stand the importance of the chair. Fatigue is the one side effect that keeps on keeping on. I exercise routinely and work on my strength and stamina as much as I can.

I suppose the lack of a con­sis­tent or routine sleep pat­tern con­trib­utes to the fatigue as much as any­thing. There is, though, a bit of a silver lining on that front. I have learned to enjoy the quiet of the 2:00 a.m. alone time. Look­ing out the window, or better yet, going out­side at 2:00 in the morn­ing because I cannot sleep seems to give me a good per­spec­tive on how small I really am.

Worry. Oh boy. I wish I did not worry so much. But we are who we are. I have come to under­stand that as long as I ac­cept my worry and don't worry so much about worrying so much, I do a lot better.

At first I worried about every­thing. The saying “it doesn’t mat­ter” seems blatantly false! Everything mat­ters. If a blood re­­sult num­ber was slightly dif­fer­en­t from the pre­vi­ous month’s level, I worried. Now­adays, a slight back pain or new ache still brings con­cern and worry. An occasional lack of hunger or appetite can lead me to some dark thoughts. Everything seems to mat­ter when you are living with can­cer. 

Ahh, but what I have learned, or at least sus­pect, is that every­thing might mat­ter, but just not all of the time. Living with mul­ti­ple myeloma is just another part of my journey.

I definitely am “still in school” re­gard­ing how best to navigate worry. Man, it’s a load.

My oncologist (Doctor T) is just the best, and not just for the reasons you would think. Yes, his med­i­cal wisdom and desire for in­for­ma­tion provide me with comfort; he is always providing fresh in­for­ma­tion. However, it is his spiritual pres­ence or awareness that really has given to me a better sense of what “this” is all about.

We have spent countless hours in the examination room visiting about beliefs, ideas, and thoughts pertaining to our lack of con­trol, about what could come next, and about var­i­ous doctrines and dog­mas that may or may not be of value. The bottom line is that turning the dis­cus­sion away from myself and to­ward a “bigger picture” kind of plane reduces my self-importance. What a gift.

Getting a “good num­bers” lab re­­sult is so comforting. It makes me roll down the windows (I am dating myself by using the term “roll down the windows”) and turn up the vol­ume on the CD player in the truck as I drive back from the hos­pi­tal. When I go in for an appoint­ment to re­view “my num­bers,” I am a “Nervous Nellie” for about a day and a half prior to the meeting. Not know­ing the lab re­­sults is stressful. I want to cry, and I have teared up when the num­bers come back and they are as we would like them to be.

I be­lieve that thoughts about the un­cer­tainty of what comes next if the num­bers are lousy are the cul­prit for this anxiety. I must stop and remind myself to “stay in the now” and remember that I never really know, and never really have known, what comes next re­gard­less of my lab num­bers.

And finally, I want to again thank all of you who have re­sponded to my columns over the past 11 months. I have learned through ex­peri­ence that it is blessing to share life with others, which I feel I have ex­peri­enced through this column. Thank you for this gift. What a deal.

I realized that I had a lot going on in my life in the last six years, in­clud­ing treat­ments for mul­ti­ple myeloma. I also realized that doing stitching helps me to relax during stressful times.

I keep a detailed list of my stitching projects. Looking over this list, I can see that I would start projects when I felt quite well, and then they would be forgotten when I had med­i­cal issues. My goal now is to finish these projects, and not leave them untended. So I work away on them gradually, but I still start new projects also. Like many other stitchers, I do have a lifelong supply of projects in my stash!

Even though I have been a myeloma patient for over 11 years now, I feel quite well most of the time and am extremely grateful for all of the care and treat­ments I have re­ceived that not only saved my life but have given me back a good quality of life. My quality of life might not be what everyone who is perfectly healthy would like, but it allows me enough time to pur­sue in­ter­est­ing ac­­tiv­i­ties. I try to stay fit, keep up with paperwork, and pur­sue hobbies. I have found that I like writing and edit­ing. I think that most people would like to have such a lifestyle, especially if they are ap­proach­ing age 70, as I am.

Given that I have undergone var­i­ous treat­ments so far, I thought I would share my ex­peri­ences with the side effects and how I addressed them:

My initial treat­ment in 2009 con­sisted of Velcade (bor­tez­o­mib) plus dexa­meth­a­sone. At the time, Velcade was only avail­able as an in­tra­venous in­fusion, and I needed to take an anti-nauseant, Kytril (granisetron), and hydrating fluid with that. I had quite a bit of nausea from that treat­ment, and the veins in my hands appeared to be collapsing. For the nausea, I took Kytril at home also, be­tween treat­ments, and I ate very lightly and drank ginger ale. I couldn’t do much about the collapsing of the veins except to use the right hand at one treat­ment and then the left hand the next time.

I also got mild neu­rop­athy in my feet. It manifested as a numbness and tingling in the front of the foot, which has stayed with me per­ma­nently. My doctor pulled me off treat­ments after only four cycles since he was worried about the neu­rop­athy getting worse.

The dexa­meth­a­sone caused sleeplessness and strange imaginations. I did not know then that a sleeping aid would have helped me to deter those effects. Instead, I did not man­age the sleeplessness and imaginations well.

So, in retrospect, the treat­ment was not really tol­er­able, but it did the job of beating back the myeloma plasma cells to a really low level, so I did not mind putting up with the side effects.

I then had a stem cell trans­plant, which was a chapter in and of itself. In summary, it was not tol­er­able in everyday terms, but it helped to keep the myeloma at bay.

After the trans­plant, I took Revlimid (lena­lido­mide) plus dexa­meth­a­sone at var­i­ous times through­out the past years.

The first time was in 2010, for a year, when Revlimid was newly ap­prov­ed in Canada. I ex­peri­enced low blood counts, especially low neu­tro­phil levels. As a remedy, my doctor would some­times have me skip a week or two of treat­ment so that my blood counts could recover.

Once my myeloma reached almost undetectable levels, I went off of treat­ment until 2014. Of course, that was the best time in terms of tol­er­a­bil­ity. I felt good and just hoped I would not relapse. However, it seems that most patients with myeloma do suffer relapses, and so did I.

I went back onto Revlimid plus dex that year. I wasn’t keen to go back onto treat­ment but felt I had no choice. This time, I took the sleeping pill trazadone to help with the dex side effects, which also in­cluded talkativeness and confusion. I do simpler tasks for a couple of days, with great energy. I try to be self-aware that I might be bothering others if I talk too much. In addi­tion, I don’t drive for a couple of days after I take the dex. The main prob­lem I had with Revlimid this time was gastro­in­tes­ti­nal issues. I tried to modify my diet and took over-the-counter med­i­ca­tion and I was able to man­age the issue.

Although I was told I would now be on treat­ments indefinitely, life can take twists and turns that affect pre­vi­ously made plans.

In 2016, I was diag­nosed with early-stage breast can­cer and needed to undergo surgery and radi­a­tion. In order to give me the best chance to beat that can­cer, I went off the myeloma treat­ments again. This time, to my surprise, the myeloma counts stayed low on their own until 2018, when I went back onto Revlimid plus dex. I had the same tol­er­a­bil­ity issues as be­fore, mainly gastro-intestinal and mental, so I used the same tools as be­fore to combat them.

Since my myeloma markers had once again dropped sig­nif­i­cantly, I went off treat­ment until I re­lapsed again. The “tolerability” of this de­ci­sion was not so much physical, but emotional. I had a com­plete dread of start­ing treat­ment again. I kept watching as the counts crept up, and wondered every month if this would be the one when I would have to start treat­ment again. When the counts became high enough last fall, I started a regi­men of Dar­za­lex (dara­tu­mu­mab), Revlimid and dex, which I have described in pre­vi­ous columns.

Now I am coping with quite a few drugs in my sys­tem. The addi­tion of Dar­za­lex has meant that I need to go to the in­fusion center because it is admin­istered in­tra­venously. I get very hydrated on the in­fusion day since there is more than a liter of fluid admin­istered, over 90 min­utes. I am at the main­te­nance level of having it every four weeks now. Along with the Dar­za­lex, I take the dex, an anti­his­ta­mine, and acet­amin­o­phen (Tylenol, para­cet­a­mol) (to prevent fever).

I start the Revlimid cycle that day also, and I am taking a main­te­nance ther­apy, anastrozole (Arimidex), for the breast can­cer. Since both Revlimid and anastrozole can cause blood clots, I also am taking Eliquis (apixaban) twice a day, every day.

I do not notice much in the way of side effects from Dar­za­lex, but on my Dar­za­lex treat­ment day, I feel just ex­hausted by the end of the day. Other than that, I con­sider it to be quite tol­er­able.

The Revlimid is once again causing gastro­in­tes­ti­nal prob­lems, so this time my doctor put me onto the bile acid sequestrant Olestyr (Questran, cholestyramine for oral suspension). That has helped me quite a bit. All along with the Revlimid, I some­times have had severe cramps in my calves or milder cramps in my hands. I find that staying well hydrated (sometimes I take an elec­tro­lyte drink such as Gatorade), stretching, or just a acet­amin­o­phen help.

I really never thought that as I got older I would have a med­i­cine cabinet full of pills and potions. I made a chart to keep track of all of these med­i­ca­tions, since it is easy to forget to take them some­times. However, all in all, my treat­ment regi­men is tol­er­able, and I do have time for my other ac­­tiv­i­ties in life. I just have to remember to take the med­i­ca­tions.

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The quotation for this month is from Walt Whitman (1819 – 1892), American poet, essayist, and journalist, who said: "Keep your face always to­ward the sunshine – and shadows will fall behind you."